U.S. Researcher Starts Treatment Fund in Uganda

Dr. David Bangsberg studies HIV treatment access, adherence, and outcomes in San Francisco, among persons in resource-poor settings who are homeless or at risk for mental illness or illegal drug use. His group was invited to Uganda to study treatment outcome in resource-poor settings there. Since institutional monies would not pay for drugs for treatment, which cost about $300 a year, Dr. Bangsberg set up the Family Treatment Fund to receive tax-deductible contributions to treat some of the Ugandans he is working with. More information can be found at http://familytreatmentfund.ucsf.edu/.

AIDS Treatment News asked Dr. Bangsberg about his research and about the new fund.

ATN: Can you tell us how your work in San Francisco led to the work in Uganda?

Dr. Bangsberg: The focus of our group is the relationship between poverty and treatment outcomes in HIV-infected people. We studied a group of homeless people in San Francisco, in the Tenderloin district, to look at how well people who are homeless or marginally housed, with high rates of mental illness and drug use, access HIV healthcare and adhere to HIV therapy, and how that translates into improved health outcomes.

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We had established that many HIV-positive homeless patients do well when prescribed HIV antiretroviral therapy in the U.S. While HIV and poverty is a major and complex problem in the U.S., the major burden of HIV infection as well as the burden of poverty in this world is not in the Tenderloin of San Francisco but in sub-Saharan Africa. We received an invitation to help Makerere and Mbarara Universities develop a research program in HIV treatment adherence and treatment outcomes in Kampala, Uganda. With that research agenda we raised money to conduct prospective trials of how well patients there were adhering to HIV therapy, and how well their adherence translates to improved health outcomes. We started studying the only patients who are receiving HIV therapy, largely those who are purchasing their own. They are mostly obtaining a generic HIV fixed-dose combination, Triomune, which is a co-formulation of d4T, 3TC, and nevirapine -- in one pill administered twice a day.

We looked at how households finance HIV treatment, how well patients adhere to it, and how this relates to treatment outcomes -- delayed progression to AIDS, antiretroviral suppression, avoiding drug resistance, and survival. We were successful in funding these research projects.

As we raised money for research in AIDS, it became clear that there is also a responsibility to make sure peoples' lives are improved by having better access to therapy. We interview families in our studies who pool their money across twelve or fifteen family members to secure enough therapy for one of many HIV-infected people. In Uganda the median income is about $30 a month, which is the same as the price of generic HIV therapy. Families are making incredible sacrifices, and sometimes only one family member is receiving treatment, and others members die without it.

Three hundred dollars per person per year is a small amount of money by Western standards, though it's a lot of money in Uganda. If we can raise hundreds of thousands of dollars to do research on these treatment outcomes, we feel that hardworking, well-meaning persons will be able to raise money to actually buy medications, which will do more for the individuals than studying outcomes on a larger population level.

In this study Dr. Oyugi found it was possible to measure adherence quite accurately in resource-poor settings, among these patients who are purchasing generic drugs for their therapy. Preliminary results suggest that levels of adherence are quite high. Several other reports from Africa about patients receiving HIV therapy to date suggest that adherence is high and probably better than that in the general population in the U.S. So adherence is not a barrier to successful treatment outcomes. One of the big challenges is coming up with enough money to make sure that people have access to therapy.

ATN: And antiretroviral drugs cost about a dollar a day in Uganda.

Dr. Bangsberg: Realizing that a little money goes a long way, we set up the Family Treatment Fund to raise money to directly purchase HIV therapy for those people who would otherwise be unable to afford therapy, and would likely die in the next six to twelve months without it. Other medical care is already available free to patients through Makerere University.

A group of Ugandans make the decision of who are the best candidates for treatment, based on these two guidelines. When we raise $2000, we have enough money to provide five years of treatment for a person. We believe five years is important because we hope that the antiretroviral landscape will change dramatically in the next five years, and this treatment will bridge them into a time when people will have better access to antiviral therapy.

And also, even if access doesn't improve in the next five years, most of these people are members of families, often parents who are caring for children, often children of relatives who died from AIDS. If we can keep the parents alive for five more years, it allows five more years of parenthood, which for a child is an incredible gift. So the five-year benchmark is both a bridge to the future, and also an immediate benefit by giving time to raise a family, to keep a family intact. Therefore the name Family Treatment Fund.

ATN: You organized this fund?

Dr. Bangsberg: I founded the Family Treatment Fund with help from leaders in HIV care in San Francisco: the Department of Public Health, the Health Commission, business leaders here in San Francisco, and other people who have had experience in nonprofits. This is new for me; I am a researcher who studies health outcomes, I've never been a philanthropist.

ATN: Is the Family Treatment Fund under the University of California?

Dr. Bangsberg: The University of California San Francisco is our fiscal agent; it manages the donations and makes sure they are used appropriately. Any donation is tax deductible.

The Web site is http://familytreatmentfund.ucsf.edu/. Donations can be made either by checks payable to the University of California San Francisco for the Family Treatment Fund, or by credit card online or by phone through the University's donation page. The goal of the Family Treatment Fund is to raise $1.4 million to put 500 people on antiretroviral treatment for five years.

ATN: Why did you have to start a new organization to raise funds for treatment?

Dr. Bangsberg: The major players in HIV are not natural funders for generic antiretroviral therapy. Big pharma, which has made major contributions to improving HIV therapy, is not a natural partner in making generic HIV drugs available.

The other major player is the U.S. National Institutes of Health, and it has not made it possible to directly fund antiretroviral treatments as part of research studies. The Gates Foundation has prioritized prevention rather than treatment. Hopefully the World Bank funds, and the money the Bush Administration has pledged, will better translate into access to antiretroviral therapy. But it will take time for these pledged funds to actually lead to people receiving medications.

The Family Treatment Fund is small and very flexible. We can take a donation and directly purchase the medications, and get them to the person within a month or two of receiving the money. We see ourselves as small but flexible and responsive, able to bridge the gap to the time when therapy will be more accessible on a broader scale, funded by major institutions.

ATN: Couldn't pharmaceutical companies donate their own drugs?

Dr. Bangsberg: The introduction of generic therapy has led to dramatic reductions in price for branded therapy as well. The companies saw the new competitive landscape, and reduced their prices many fold to make them more competitive with generic therapy. Triomune is the least expensive antiretroviral therapy available anywhere in the world. But pharma has responded with dramatic reductions in their prices, also.

You might ask, how well do these drugs work? There have been several early reports on Triomune therapy. And these early reports suggest that we get good viral suppression and CD4 responses, and delayed progression to AIDS and death. So we think this is very effective antiretroviral therapy. It is certainly an accepted option in the U.S. to use this branded combination therapy, and we have no reason to believe that the generic co-formulation performs any less well.

ATN: How much can private contributions do?

Dr. Bangsberg: When people hear about the international HIV pandemic and learn about it, they often come to feel that the problem is so large that they are paralyzed, and unable to make a meaningful contribution. The pandemic is beyond comprehension in its enormity, and is the most serious global issue we have at this time. I think the Family Treatment Funds provides a way for someone to make a very tangible contribution to this pandemic. Thirty dollars provides a month of antiretroviral therapy; $2000 provides five years of therapy for one person.

The message we want to get across is one of hope, and how an individual can help one person's life in this pandemic. It breaks the problem down to one person at a time, one contribution at a time, so people can contribute in a meaningful, powerful, and important way.

ATN: When people start doing this, maybe they can also lobby governments, corporations, and other institutions?

Dr. Bangsberg: We believe wider access to antiretroviral therapy will be politically powerful in local governments and communities. When someone sees a person go from 50 pounds to 150 pounds with several months of treatment, communities may start demanding it. So we think that even small demonstrations of success will begin to have important political impact.

We are optimistic that these programs will improve access to therapy. We certainly hope that governments and other organizations can put us out of business in trying to raise money to treat individual people. But until that time there is a need for small, flexible, responsive organizations to provide treatment to as many individuals as possible.

Note: As of June 18, 2004 the Family Treatment Fund had raised $22,000 and had ten people on therapy. For every $2,000 they raise they put another person on antiretroviral treatment, funded for five years; priority is given to patients likely to die in six months without antiretrovirals. Ninety four percent of contributions go to pay for the drugs, through wire transfer to pharmacies in Uganda; the other 6% is for fiscal sponsorship by the University of California San Francisco. For more information or to make a contribution, contact the Family Treatment Fund, http://familytreatmentfund.ucsf.edu/.

ISSN # 1052-4207

Copyright 2004 by John S. James. Permission granted for noncommercial reproduction, provided that our address and phone number are included if more than short quotations are used.

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